I want to mix things up a bit...
Jason and I just got in from a walk, and I thought that I would share part of our conversation with you.
First, let me set the scene:
It's about 7:15 in the evening, a late November evening to be exact, so the darkness is out in full. The ground is covered in freshly fallen snow. We are careful to walk facing the oncoming traffic - if there was going to be traffic. We would walk on the sidewalk, but there isn't one.
I'm feeling quite toasty and warm in my new winter jacket. It's all black, with a big zip-up collar, an attached hood, and it comes down further on my hips than my previous winter jacket. My mittens are black, and since I switched them to their proper hands, they are quite cozy. My touque (a Canadian winter hat!) is pink with white stripes.
Finally, three quarters of the way through our walk, an approaching car! I fell in line behind Jason and noticed that his jacket (new 2 years ago) has reflective properties to it. Although it is mostly dark blue, it has silver toned letters and stripes that are reflective.
So here is the conversation:
Me: My jacket doesn't have anything reflective on it.
Jason: Let's see...well maybe the little words are a bit reflective..
I looked down at the small lettering on the cuff of my sleeve. Jason fell in line behind me to check out the back of my jacket.
Jason: Nope. You aren't reflective. You see...I'm dressed for safety. You...are dressed for fashion.
Me: Well then I guess that I will have to stay with you...so that you look good.
*smiles*
Emily
knowledge and ignorance
Posted in on Monday, November 24, 2008 by Emms
Ignorance is bliss.
Knowledge is power.
When I was first diagnosed with ADEM (eight months prior to the diagnosis of MS) I always felt as if there was something that my neurologist wasn't telling me. I can remember using the expression, "He seems to be waiting for the other shoe to drop".
Today, I believe that the manner in which the original neurologist introduced me to my "attack" has proved to be a blessing. I never received more information than I could handle, and I didn't receive any answers to questions that I didn't ask.
I have been trying to figure out how it is that I have handled the past two and half years as well as I have. Yesterday, I realized that for me, ignorance is bliss, and knowledge is power.
Knowledge:
I have filled my life with MS related information. I neither hide from, nor hide, my disease. I believe in the importance of learning and sharing any information that I get my hands on. I encourage my family and friends to do the same.
Ignorance:
I don't know everything about my own situation, I still believe that. If you ask me how many lesions I have/had, I can only tell you "countless". I can't tell you where I would fall on a disability scale (no pun intended!). I once wondered if I have "black holes" in my brain, but pursued it no further.
So with knowledge of the big picture, and little about the fine details, I find myself more at ease with my own situation.
Does that make knowledge bliss?
Emily
Knowledge is power.
When I was first diagnosed with ADEM (eight months prior to the diagnosis of MS) I always felt as if there was something that my neurologist wasn't telling me. I can remember using the expression, "He seems to be waiting for the other shoe to drop".
Today, I believe that the manner in which the original neurologist introduced me to my "attack" has proved to be a blessing. I never received more information than I could handle, and I didn't receive any answers to questions that I didn't ask.
I have been trying to figure out how it is that I have handled the past two and half years as well as I have. Yesterday, I realized that for me, ignorance is bliss, and knowledge is power.
Knowledge:
I have filled my life with MS related information. I neither hide from, nor hide, my disease. I believe in the importance of learning and sharing any information that I get my hands on. I encourage my family and friends to do the same.
Ignorance:
I don't know everything about my own situation, I still believe that. If you ask me how many lesions I have/had, I can only tell you "countless". I can't tell you where I would fall on a disability scale (no pun intended!). I once wondered if I have "black holes" in my brain, but pursued it no further.
So with knowledge of the big picture, and little about the fine details, I find myself more at ease with my own situation.
Does that make knowledge bliss?
Emily
how I'm dealing with word finding
Posted in laughs at home, symptoms on Saturday, November 22, 2008 by Emms
Once upon a time, I was articulate, well spoken, and used complete sentences in conversation.
Now, I pause...mumble, struggle to remember dates, times, words...
I'm sure that I have told you how I, lover of colour and all things design, have completely called something by it's wrong colour name...but at least I knew that it was a colour! On the other end of the spectrum, I fail to see the relationship between a "needle" and a "noodle", but my brain seems to think that in the moment, these two are interchangeable.
So I'm not sure if I should be bothered by my latest verbal gaffe. In some aspects, these two items totally relate to each other, and in another...not so much.
Jason and I own a six year old mid-high end luxury SUV (I'm telling you that, because it is important to the definition and description of the event). Over the past couple of years, it has had its share of recalls and other service related troubles...expensive troubles. This past week, she (the SUV) is in the shop again, and I called my parents to express my disgust with her.
In a voice heightened with emotion...in a conversation free of my usual sarcasm and jolliness...a conversation with serious undertones, due to the amount of dollars attached to the subject...I blurted out,
"It's a MELON!"
Chuckles. Laughter. Almost hysterics on all three telephone receivers.
"Don't you mean, "lemon"?
Right letters. Wrong order. At least it was still a fruit, albeit it sweet, not sour.
Emily
Now, I pause...mumble, struggle to remember dates, times, words...
I'm sure that I have told you how I, lover of colour and all things design, have completely called something by it's wrong colour name...but at least I knew that it was a colour! On the other end of the spectrum, I fail to see the relationship between a "needle" and a "noodle", but my brain seems to think that in the moment, these two are interchangeable.
So I'm not sure if I should be bothered by my latest verbal gaffe. In some aspects, these two items totally relate to each other, and in another...not so much.
Jason and I own a six year old mid-high end luxury SUV (I'm telling you that, because it is important to the definition and description of the event). Over the past couple of years, it has had its share of recalls and other service related troubles...expensive troubles. This past week, she (the SUV) is in the shop again, and I called my parents to express my disgust with her.
In a voice heightened with emotion...in a conversation free of my usual sarcasm and jolliness...a conversation with serious undertones, due to the amount of dollars attached to the subject...I blurted out,
"It's a MELON!"
Chuckles. Laughter. Almost hysterics on all three telephone receivers.
"Don't you mean, "lemon"?
Right letters. Wrong order. At least it was still a fruit, albeit it sweet, not sour.
Emily
hot off the press
Posted in on Friday, November 21, 2008 by Emms
From the Tel-Aviv (Israel) Medical Center (courtesy of CTV.ca)...
Researchers are significantly helping MS patients (including a Canadian!) using the patients own stem cells. By removing mesenchymal stem cells from bone marrow, which can become heart tissue, bone or nerve cells, growing it in large quantities, and injecting it back into the patient...existing damaged nerve cells are being repaired. The key is that it must be done early in the disease, before irreversible changes occur.
***my own note, What is considered to be irreversible? How do they know?***
A specialist at an Ottawa hospital is hoping to speed up this research, and bring the treatment to Canada.
Even when I am just starting my day, someone, somewhere, is working on halting and helping MS.
Emily
Researchers are significantly helping MS patients (including a Canadian!) using the patients own stem cells. By removing mesenchymal stem cells from bone marrow, which can become heart tissue, bone or nerve cells, growing it in large quantities, and injecting it back into the patient...existing damaged nerve cells are being repaired. The key is that it must be done early in the disease, before irreversible changes occur.
***my own note, What is considered to be irreversible? How do they know?***
A specialist at an Ottawa hospital is hoping to speed up this research, and bring the treatment to Canada.
Even when I am just starting my day, someone, somewhere, is working on halting and helping MS.
Emily
diabled parking - again
Posted in on Thursday, November 20, 2008 by Emms
I think that I had intended to mention this some time ago - and I didn't. My trip to the hospital the other day reminded me that I wanted to share this with you.
The Winnipeg Parking Authority recently (as in within the past six months) changed the parking rules for people who have disabled parking permits. In the past, the permit allowed the person to park for free in City parking lots and street spaces. Street parking spots were accompanied by individual parking meters.
Individual parking meters are now a thing of the past, and free parking for disabled persons has also been wiped out. Instead, you pay for your parking at a central meter, and return to your car with a ticket. You can either pay by cash, or credit card, and can even pay by telephone! This insures that you don't have to hurry back to your car when your time is up, you can phone in and charge it to your credit card! whooppeeee! The city is also promising designated handicapped parking on the streets.
There are some obvious reasons why disabled people do not benefit from this! But on Monday, when I experienced it first hand, I realized how poor it really is.
It's November, and Winnipeg has already been hit with snow-rain-sleet-freezing-thawing-freezing weather. This makes for crunchy, slippery, and uneven sidewalks (already a challenge for a well-moving person, not to mention a person with mobility issues). But I crunched along, thankfully at this time, with the grace and agility of a well-moving person. When I arrived at the central parking meter, I discovered that it was at curb level, at the base of a cement pad slope. I would guesstimate that the slope equalled about a 12" (one foot) drop.
In fairness to someone, the cement pad slope was clear of ice, snow, and any other debris...but come on! What if I had a walker, or a cane! The Parking Authority thinks that they are doing me a favour by letting me call them, and charge the fee to my credit card.
The change in parking policy is a step backwards for equal and accessible living!
Looking for something witty to say,
Emily
The Winnipeg Parking Authority recently (as in within the past six months) changed the parking rules for people who have disabled parking permits. In the past, the permit allowed the person to park for free in City parking lots and street spaces. Street parking spots were accompanied by individual parking meters.
Individual parking meters are now a thing of the past, and free parking for disabled persons has also been wiped out. Instead, you pay for your parking at a central meter, and return to your car with a ticket. You can either pay by cash, or credit card, and can even pay by telephone! This insures that you don't have to hurry back to your car when your time is up, you can phone in and charge it to your credit card! whooppeeee! The city is also promising designated handicapped parking on the streets.
There are some obvious reasons why disabled people do not benefit from this! But on Monday, when I experienced it first hand, I realized how poor it really is.
It's November, and Winnipeg has already been hit with snow-rain-sleet-freezing-thawing-freezing weather. This makes for crunchy, slippery, and uneven sidewalks (already a challenge for a well-moving person, not to mention a person with mobility issues). But I crunched along, thankfully at this time, with the grace and agility of a well-moving person. When I arrived at the central parking meter, I discovered that it was at curb level, at the base of a cement pad slope. I would guesstimate that the slope equalled about a 12" (one foot) drop.
In fairness to someone, the cement pad slope was clear of ice, snow, and any other debris...but come on! What if I had a walker, or a cane! The Parking Authority thinks that they are doing me a favour by letting me call them, and charge the fee to my credit card.
The change in parking policy is a step backwards for equal and accessible living!
Looking for something witty to say,
Emily
Rebif please
Posted in Rebif on Tuesday, November 18, 2008 by Emms
I think that my appointment yesterday with Dr. E was a waste of time. On the plus side, I arrived early, and got called in right away...by Dr E himself. This meant that I didn't need to see the nasty nurse!
While he isn't refusing to prescribe Rebif, he is highly suggesting that I switch to a different drug. The reason for this is that although he does not have to test my lipase or my platelets, when the high numbers crossed his desk, he must investigate. Since a conversation that he had with my GP provided no further insight in to these mysterious levels, he must assume that the Rebif is the culprit. Elevated lipase is not usually an issue with Rebif (that's why he wouldn't test it under normal circumstances) but documentation does show that it CAN become an issue.
I don't feel that I left his office with any clear cut decisions, and I don't think that he feels that any decisions were made either. I mentioned that I would like to wait until after my tests in December, as this could provide us with some answers. We also discussed the option of a "drug holiday" (two weeks with no drug, but the potential of a relapse). We talked about Copaxone, and why I won't return to it (welts!). And he talked about Avonex (once a week, self-injected intra-muscular injections)...and as a last resort, Betaseron (another beta-interferon like Rebif). He wants me to make educated decisions.
In the meantime, he has sent a referral to a gastrointerologist for me.
I think that I should host an open house for all medical specialties...come and check me out...coffee and cake will be served!
Emily
While he isn't refusing to prescribe Rebif, he is highly suggesting that I switch to a different drug. The reason for this is that although he does not have to test my lipase or my platelets, when the high numbers crossed his desk, he must investigate. Since a conversation that he had with my GP provided no further insight in to these mysterious levels, he must assume that the Rebif is the culprit. Elevated lipase is not usually an issue with Rebif (that's why he wouldn't test it under normal circumstances) but documentation does show that it CAN become an issue.
I don't feel that I left his office with any clear cut decisions, and I don't think that he feels that any decisions were made either. I mentioned that I would like to wait until after my tests in December, as this could provide us with some answers. We also discussed the option of a "drug holiday" (two weeks with no drug, but the potential of a relapse). We talked about Copaxone, and why I won't return to it (welts!). And he talked about Avonex (once a week, self-injected intra-muscular injections)...and as a last resort, Betaseron (another beta-interferon like Rebif). He wants me to make educated decisions.
In the meantime, he has sent a referral to a gastrointerologist for me.
I think that I should host an open house for all medical specialties...come and check me out...coffee and cake will be served!
Emily
Rebif Rebif Rebif
Posted in Rebif on Friday, November 14, 2008 by Emms
My MS doctor has been closely monitoring me while I am on Rebif. If you remember, I went from weekly blood tests, to now monthly blood tests. He wants to keep a close eye on my liver enzymes, which, if I haven't mentioned yet, are currently normal. He takes his monitoring quite seriously: I only ever receive 8 weeks of Rebif per refill. He also calls me...himself...to let me know what levels are out of the normal range.
This means that every two months, my pharmacy has to request a renewal from the MS Clinic. In turn, this means that I have to keep a close eye on my supply, and any refills that I have, and make my request to my pharmacy in good time, in order for them to hear back from the Clinic.
Before I left for Ontario (which was on October 30) I called my pharmacy, and requested that they request a renewal. On Tuesday of this week, I called the pharmacy and ordered a month of Rebif.
Are you still with me?
Yesterday, my pharmacy called me to let me know that the Clinic would not renew my Rebif. I know that I have exactly 2 needles left, and this is no time for games! Apparently, Dr.E (my MS doc) wants to see me before he gives me more Rebif. A quick call to the Clinic gets me set up for a visit with Dr. E this coming Monday.
I know exactly what is coming. In our last conversation, Dr E. said that he wants me to consider stopping the Rebif. I'm not exactly sure what he is basing this on. My liver enzymes have been coming in normal for the past two months, and the hepatologist isn't concerned.
What is high, are my platelets...and my lipase...oh, and my hemoglobin is low.
This has been since my "Summer 08 Trauma...Appy-Gate".
I'm going to ask Dr E to leave me on the Rebif while my other medical issues get sorted out. (which is now going to be in December, as my colonoscopy was rescheduled). I'm also going to ask for an MRI. I haven't had one since April 07, and I'm curious. On the outside, it looks like the Rebif is working for me...but what about inside? I'm a prime example of the lack of correlation between the presence of lesions and the visible presence of disease.
I feel the need to repeat some past whining...just let me be!!! Why can't I have a month of no doctors? Why does someone always make me think about this disease?
I'm not sad about this...I'm frustrated!
Can I back up for a minute...
I am assuming the Rebif is working for me. I base this assumption on the following: I don't have any new symptoms. I think that just because I have moments of dancing around the house, that it is working. But I know better than that. If you are one of the lucky few to have a had a conversation with me lately, you would know that my brain is struggling. Also, I'm not wobble-less and I'm not a bundle of energy (adrenalin yes, energy...no).
Maybe I shouldn't be so quick to defend the Rebif. It just feels like the right thing to do because I don't want to go back on the Copaxone, as Dr E has suggested.
**Head on Emily...head on. This is no time to put your head in the sand.**
Emily
This means that every two months, my pharmacy has to request a renewal from the MS Clinic. In turn, this means that I have to keep a close eye on my supply, and any refills that I have, and make my request to my pharmacy in good time, in order for them to hear back from the Clinic.
Before I left for Ontario (which was on October 30) I called my pharmacy, and requested that they request a renewal. On Tuesday of this week, I called the pharmacy and ordered a month of Rebif.
Are you still with me?
Yesterday, my pharmacy called me to let me know that the Clinic would not renew my Rebif. I know that I have exactly 2 needles left, and this is no time for games! Apparently, Dr.E (my MS doc) wants to see me before he gives me more Rebif. A quick call to the Clinic gets me set up for a visit with Dr. E this coming Monday.
I know exactly what is coming. In our last conversation, Dr E. said that he wants me to consider stopping the Rebif. I'm not exactly sure what he is basing this on. My liver enzymes have been coming in normal for the past two months, and the hepatologist isn't concerned.
What is high, are my platelets...and my lipase...oh, and my hemoglobin is low.
This has been since my "Summer 08 Trauma...Appy-Gate".
I'm going to ask Dr E to leave me on the Rebif while my other medical issues get sorted out. (which is now going to be in December, as my colonoscopy was rescheduled). I'm also going to ask for an MRI. I haven't had one since April 07, and I'm curious. On the outside, it looks like the Rebif is working for me...but what about inside? I'm a prime example of the lack of correlation between the presence of lesions and the visible presence of disease.
I feel the need to repeat some past whining...just let me be!!! Why can't I have a month of no doctors? Why does someone always make me think about this disease?
I'm not sad about this...I'm frustrated!
Can I back up for a minute...
I am assuming the Rebif is working for me. I base this assumption on the following: I don't have any new symptoms. I think that just because I have moments of dancing around the house, that it is working. But I know better than that. If you are one of the lucky few to have a had a conversation with me lately, you would know that my brain is struggling. Also, I'm not wobble-less and I'm not a bundle of energy (adrenalin yes, energy...no).
Maybe I shouldn't be so quick to defend the Rebif. It just feels like the right thing to do because I don't want to go back on the Copaxone, as Dr E has suggested.
**Head on Emily...head on. This is no time to put your head in the sand.**
Emily
injections
Posted in on Thursday, November 13, 2008 by Emms
I'm home from my trip to Ontario. Before I left, I mentioned that my Rebif injections are becoming a bitter part of my life. A result of my bitterness, is that Jason has become bitter towards the injection as well.
My "vacation" presented itself as an opportunity for me to become more comfortable (and willing!) to do the injections myself, and for Jason to have a break. So while I was away, Ladyfingers performed two of the injections (manually) and I did the other two with the Rebiject (auto-injector). No big deal. But it was a good thing that I always carry an extra needle!
The Rebiject has 3 pieces: a needle cap remover, the needle housing, and the trigger housing. The needle cap remover is a part of the needle housing, that has to be removed prior to injecting. The steps are quite simple: press down the "thingy" in the trigger housing, push the needle into the needle housing, screw the two pieces together, and then remove the needle cap remover.
A couple of times in the past, Jason has forgotten to remove the needle cap remover. Little did I know, the needle cap remover is not a safety device - it is simply a device to remove the needle cap safely. So when I set the Rebiject against my thigh, pressed the trigger housing into the needles housing (the safety release!) and pushed the trigger...I didn't feel anything because I hadn't removed the needle cap piece. At first I thought that I was experiencing an awesome injection...sensation free...then I recognized what I had neglected to do. So I lifted the device off my leg, and pulled the needle cap remover off...
...creating a geyser! Rebif streamed out of the giant plastic needle, arching across the table, and onto the floor.
In the past, when forgetting to remove the needle cap, and after pressing the magic button, Jason has always unscrewed the Rebiject, and started over.
Silly me.
Emily
My "vacation" presented itself as an opportunity for me to become more comfortable (and willing!) to do the injections myself, and for Jason to have a break. So while I was away, Ladyfingers performed two of the injections (manually) and I did the other two with the Rebiject (auto-injector). No big deal. But it was a good thing that I always carry an extra needle!
The Rebiject has 3 pieces: a needle cap remover, the needle housing, and the trigger housing. The needle cap remover is a part of the needle housing, that has to be removed prior to injecting. The steps are quite simple: press down the "thingy" in the trigger housing, push the needle into the needle housing, screw the two pieces together, and then remove the needle cap remover.
A couple of times in the past, Jason has forgotten to remove the needle cap remover. Little did I know, the needle cap remover is not a safety device - it is simply a device to remove the needle cap safely. So when I set the Rebiject against my thigh, pressed the trigger housing into the needles housing (the safety release!) and pushed the trigger...I didn't feel anything because I hadn't removed the needle cap piece. At first I thought that I was experiencing an awesome injection...sensation free...then I recognized what I had neglected to do. So I lifted the device off my leg, and pulled the needle cap remover off...
...creating a geyser! Rebif streamed out of the giant plastic needle, arching across the table, and onto the floor.
In the past, when forgetting to remove the needle cap, and after pressing the magic button, Jason has always unscrewed the Rebiject, and started over.
Silly me.
Emily
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Little bits about my life with MS
